Tuesday, December 24, 2013

Merry christmas

We made it through hip surgery and Noah wants to wish all his friends a very merry Christmas!!

Saturday, November 16, 2013

Going home

After a long recovery at Arnold Palmer Noah is being released. I am so glad Noah has been so strong throughout this entire deal. I was so very worried about this all for weeks and once again Noah had kicked Schizencephaly in the butt!
Smiley boy is happy to be heading home after three days of pain and hospital. Mommy is very very happy.

Thursday, November 14, 2013

Surgery success

Noah's right hip and right arm surgery took nearly 9 hours to  complete, but was a great  success
After a year of be insisting on this surgery my fears were confirmed when the Dr got into the hip and found Noah's leg had twisted almost 90degrees. If they had not taken care of this all when we Did there was a great chance his pelvis and lower spine could have began crushing as well as the femur.
Noah is definitely in pain but he Did amazingly and he teaches me more and more how strong willed we can be both mentally and physically. I am just so glad I get to hold him and kiss him more. I was so worried this surgery would be too much for his small body.
Now get is healing up and having some bone broth to build his strength. We should be leaving the hospital tomorrow. We ccanot wait!

Thursday, November 7, 2013

Good news on surgery

Good news, Dr B says since there are three surgeons working at the same time... Two on the hip and one on the wrist they think they can get it done within four hours. That is considering Noah does not have too much damage to the hip socket. Mommy is feeling much better

Friday, October 11, 2013

The waiting

Since Noah's broken femur it seems we've just seen issue after issue arise. His neck is always tight and he has been prescribed diazapam for pain.
His hip is completely out of socket bow making his pan levels high and sadly the only choice I see for him now is surgery. It is so scary since I have to compromise yet another time and subject him to go under,this time more than four hours.
My biggest fear being of course his body is not strong enough to make it through surgery and more than that heal and get better quickly. No one can calm my next crazy as it seems I am in one endless panic attack until this happens.

I lay awake and find myself pleading with the fear  to just give him more time in this world. I hate the fact he has been under so much and just when I think It's over a bigger surgery is around the corner.
I absolutely hate this disorder. I hate every part of it. From day one worrying about what the future will hold and now today worrying about how much he has already gone through and asking how much more his little amazing body can tolerate.
My fears sink in late at night. I feel the tears in just eyes and the feeling of wanting to run and scream and just sheer panic comes over my whole mind. It's an endless cycle.
I know his brother has been stressing this as well. We've talked about the consequences and I feel so bad at times River has to deal with so much because his weak father decided to take the easy road. There is a special place for father's that abandoned children both emotionally and financially.
All I can do is just keep my head up and know in my heart this is not a decision to put off. His pain is so bad he surely could not live much longer in that condition. It would take an even bigger toll if we declined to help him.
Currently the scoliosis puts pressure on his already under developed lungs so I just keep with these nightmares.  They have kept me up for a week now. Staring at the ceiling tears rolling down my face and fearing he will never be out of pain or worse never wake up after surgery.
I hate schizencephaly. Hate it!

Sunday, September 22, 2013

Schizencephaly Awareness necklaces and Keychains

Shea Page says " After my daughter Stellan was diagnosed with Schizencephaly, I wanted to help spread the word about the rare brain disorder. I began designing and making these heart shaped MRI image to help raise awareness. All proceeds will go directly to helping my daughter to get all the help and therapy she needs. Thank you for the support!"

Selling customized Schizencephaly Awareness necklaces and key chains for $15!
Send me a message with the MRI image you want me to use to custom make your order! All necklaces come in either black, green or purple ribbon, or a combination of! Looking forward to having you all wear these to help raise and spread awareness of such a rare disorder!


Sunday, September 15, 2013

Sunday, August 18, 2013

The book is out. Big thank you to all the families that contributed


Get your copy today. Already planning book two.

Noahs new vibration mat

Noah's insurance would not cover vibration therapy so we found an awesome alternative
.this mat is not for massage but specifically for whole body vibration and He loves it. It is proven by NASA to help increase bone mass for people that cannot weight bear. Super excited He loves it.

giggle man


Thursday, July 18, 2013

Noahscart 2014 awareness campaign

Families if you are interested in taking part of this worldwide campaign please add me and I will get you into the group and help you get involved. This will require a lot of work but we know it will be a huge success.

Schizencephaly Families we're going to attempt a monumental feat. And we need every family in every state to help with this coming years awareness day. We want to include every family possible this year without them having to travel out of state. For next years Schiz awareness day we're going to going worldwide!!! We want to include any family that wants to participate... yes even those NOT in the USA!! Here is the 'general' idea. Every family that wants to participate should be on the schiz awareness map. Email Lori Barrett  schizawarenessmap@gmail.com or send her a message on FB to get added. If you're already on the map make sure you let us know you want to participate. The 'plan' ... two flags, one goal, raise awareness!! Two flags will start in Florida. They will be carried by, get this, as many motorcyclists as we can muster to the next 'stop' where it will be passed to the next riders. This will go from family to family until they reach their final destinations. The idea is to have the flags come to your town by motorcycle where you can possibly plan some type of parade or something special as the flag visits YOUR family!!! We need to start early since we will have to be contacting motorcyclists and figuring a route and an official start date for the flags' journeys.

You will never walk alone

to all families struggling with this disorder. I want you to know there is a huge network waiting for you. and with us all together, you will never walk alone.

Monday, July 15, 2013

My biggest dream

This story won 2nd place in a short story contest for the Orlando sentinel and wesh 2 news out of over 5000 entries in 2002. I just found it tucked in my grandma's things and thought I would share.

  I wake up to the crisp summer sunlight peeking through the window and the birds singing good morning. Noah is snuggled up next to me and as I look down a big smile spreads across his face as he twists my hair in his two fingers. "what do you want to do today little man?" Noah smiles and leaps out of bed he runs to the kitchen and pulls open the doors pointing to fresh fruit on the top shelf. I pick him up and help him reach it as he takes a sweet plum and puts it up to his mouth and says "delicious."
 After breakfast he places his hand on my shoulder and yells "you're it!', as he bolts out the door. I stand there watching as he finds a yellow butterfly shooting by and he begins chasing all around the garden. Finally I run up to him whisk him into my arms high in the air and say "now you're it."
 Noah smiles mischievously as he slips from my grip and runs towards the garden pool. He squeals with happiness as he jumps feet first splashing me from the edge of the pool. We play mermaids and pretend we are deep sea divers exploring the treasures below the surface until the sun begins to align with the shade trees.
 We decide to take a walk and pretend to get lost in the very familiar yard and we make a map to find our way back to the castle for a bit of lunch. Noah has decided today will be a pizza day so we put on our fake mustaches and make a pizza from scratch in our best Italian accents. "Mama Mia, this is the best" Noah says as he picks the last pepperoni from the remaining slice.
 We build a fort in the living room and make believe there is an evil dragon just in the hallway and we are ever so quiet to not wake him. But then Noah jumps up like the brave knight he is and slays the dragon forever keeping our fortress safe.
 As the sun begins to fall behind the tall pines we sit on the hammock and talk about our adventures. I listen as he tells me all his dreams for the future and we watch as the moon begins to make it's appearance. One day Noah says he will be an astronaut. I tell him how my worried mother heart would miss him so as he flew into space and he tells me he will write our names in the moon sand when he lands.
 As night creeps in I chase Noah around his bed while he fights me to not put on his jammies but finally we both end up laughing and jumping on the bed until we collapse into one another's arms and just smile at one another and take a deep much needed breath.
 We talk of or dreams and what we will do the next day. What adventures we will have in store slaying dragons and visiting the tallest buildings that ever existed. He whispers to me " I love you mommy." As I watch him drift to sleep. His tiny fingers twisting my hair in his small hands.

 I wake up. Noah is laying snuggling close to me, twisting my hair I whisper " I love you Noah." He just smiles. I take his tiny hand and kiss it and tell him all about the day we will have and what is planned for us. He just looks at me smiling ,content to look into my eyes and in his own way saying I love you.
 The day is full of appointments and therapy. Last week Noah tried with all his might to say I love you. One day he will. I pick him up and place him in his wheelchair and spin him around in circles making him giggle and snort in laughter. And we start our day. Today Noah will have botox in his right arm to help release some of the tightness he has. We hope it will allow his scoliosis regress if he gets a little botox in the right shoulder. His day is filled with shots and car rides to his dr's.
 As we walk out the door I notice a yellow butterfly pass right by Noah's face but he never saw it. I place him in the car and our day begins. There is no talk of dragons and astronauts. there is only the language he and I have created to understand one another. Mostly cooing and smiles and lots of hugs.
 At the end of the day I snuggle up to him and kiss his forehead. "I love you Noah," I whisper as he takes his little fingers and grabs my hair and twists it as he smiles looking into my eyes. And he drifts to sleep.
 My biggest dreams are the ones where Noah runs around in this world leaving tiny footprints and echoes of laughter but more importantly my realistic dreams are that he never forgets to smile and twist my hair at night. I tell Noah about the man in the moon as he closes his eyes and drifts to sleep.
 I wonder as I watch him sleeping does he know what the moon really looks like? I dream for Noah. I dream of lazy days and long talks. I dream of running and screaming as loud as we can just because we can. In my dreams we chase each other around all day and sing and dance to every song on the radio and in my dreams Noah tells me his dreams. But for now, I dream for him. And the little boy he has yet had the chance to be.

Sunday, July 7, 2013

My Heart belongs to Noah

yes he does!

grieving and loss

 In the past 5 years there has been one thing that has changed in my life more than any other. Finding other families on Facebook has been such a blessing in many ways and it has also brought me closer to the idea that none of us are safe in this world from the hurts that come along with disorders. I had never thought much about Noah ever leaving this world. I suppose initially when he was born and the Dr's reminded me daily he was on "borrowed time" It was a reality but at that stage he was doing so much better than I ever imagined I guess It was never a thought that stuck in my head to the degree it does now.
 Even when Noah was seizing daily and we could not control them did I ever once think about death the way I do now. A silent fear that is my last thought each night. It is gripping.

 As the last 5 years have passed and I have met families and mothers that have lost children facing the same disorder as Noah I cannot help but feel the thought is much more real than ever before. There is no difference in their children and mine., They are the same. Their moms love them just as much. Some are less or more complicated but none of them have some date that we know this could happen. So we just try to push it into the back of our minds. With the hope it won't happen to our family.
 It is something us as parents do not talk about enough. We all have these thoughts and fears, we email each other privately but it is something we feel cannot be posted for all to see for fear it will upset other parents. For me I have recently been reaching out to my father. I talk to him every day This has all begun the last two years where I beg him to watch over us, keep us strong and the hardest of all to be there if anything were to happen. I know I cannot be the only person in my own support groups and pages worried nonstop but I think most people are too afraid to say anything.

 I also may be more open with all of this because watching my fathers suicide unfold before me I have a realistic thought of how quickly people are taken away from us. Even though we know our parents will not always be here, there is nothing that can quite prepare someone for that finite moment you know there will be no more calls, no more birthday cards, no hugs and laughs. There is never enough time and I had to let go of those things long ago with dad. I waited for 2 years after his death to just appear in front of me and give me some sign there was something more out there I just could not see. Other than dreams and my own thoughts that never happened so I have to just believe in my heart somewhere my father is out there in a happier place holding a place for the rest of my family. It is all I have.
 I also will say this without hesitation. I would always choose quantity and quality for Noah but I am also human, I could not allow him to suffer in this world knowing the only reason I was keeping him here was to appease my own selfishness by not wanting to let him go. I applaud parents that are so brave that they can let go even when they do not want to. It has to be the most difficult decision one ever has to make. We are not suppose to outlive our children. It is a hard pill to swallow. I cannot even imagine how some parents get through that except I would hope I would be in the same mindset. that when our children are no longer the child we remember but another human in pain and suffering that we allow ourselves to swallow our selfishness and let go. Knowing they will be at much more peace and not in pain. But still that thought is just so hard to imagine.
 Is it possible that in this situation, families like mine that we are preparing for our children to leave us from the time they are born? Wow that just struck me that parents like me have to have that thought as well. I know for sure at Noah's beginning life I was told so much that he would never live 1 year I had decided to make that year one of the most amazing ever. 13 years later I still live that way. Every day is going to be the last.
 I do not know if it is the many factors Noah is facing in the last couple of years or just seeing so many beautiful souls leave this world that have Noah's same disorder but I feel compelled to speak and say it is a constant worry.; Even though I do not think I myself could ever be fully prepared for in this lifetime It is something that has been in my mind since the first day I learned he would have Schizencephaly. SO technically speaking I have thought or been told to think about Noah's life ending 5 months before he was even born. I do not think there is any other way I could have lived since I have been warned since his diagnosis that this is something we must all prepare for. But still the thoughts when you lay down at night can become so intense it makes you feel sick. I cry much more than I ever did years ago. I have watched so many simple things being taken from Noah, Crawling, Casting, Broken bones, even eating. It has become a much more real feeling and one that is not as easily dismissed as it was when he was not regressing in life. Back in those days I was able to focus on all the things that he was doing and should have never been doing. I felt like we were defeating this crap disorder I have learned to hate. Instead I find now years later all those emotions return to the beginning when we are fighting tooth and nail to make strides. It is hard

 I have no doubt Noah will be here a long time more and he has a good fight in him still but I cannot help but think at what point will I allow myself to let go when his fight is over. And will that day come sooner than later? And if this is what I have weighing on my heart all the time , why is it that I am the only one talking about it?

Friday, July 5, 2013

Life in the world of schizencephaly

Noah's femur is healing Well according to his Dr's however from looking at his X-ray myself and showing to a few friends all in the medical field there seems to be an agreement that to us it simply does no appear to be set right.
I have to question at this point if it was set this way because the Dr's felt like this is as good as Noah's life will be or if his leg simply could not have tolerated any manipulation. At any rate I see a very long road ahead for my little man and I've decided (if He is able to travel considering How it was set) to. Get a second and third opinion.
I am disappointed to say the least. I sometimes look at Noah and question why He was chosen to have to live this way. Not just that but How much can his body handle. In just this year we've been through five surgeries. It's got to be as wearing to his body as it is to my heart.
I wonder How much longer I get to see him smile through all the pain and I worry what his future is going to be. He is already so fragile with bone issues,scoliosis and a dislocated hip.
I do have hope in myself as a parent because I truly feel the answers do not lie in the medical professionals but in my own heart. After all it was I that chose to fight for treatment and prevention of the scoliosis. I was the one to show concerns for his weight loss and I was the one that insisted to have bloodwork and X-ray to see the bone loss that not one Dr thought to look for.
For that reason and only that I know that as long as I am alive He has the best chance in this life. Because if it were left in the hands of the medical world He would have been doomed long ago.
So we keep fighting. It feels sometimes this battle is never ending. We have been at it since Noah was diagnosed inutero and I was relentless in getting answers and I fear that is what I will have to continue doing.
If there was a plan to all this I still don't understand it. There is nothing more frightening and difficult than to know your the only one fighting for your child. At the end of the day even through the smiles and hugs the fact remains worry fills my heart much more than anything these last few years. And it is my silent friend each night before I kiss him to sleep.

Wednesday, June 26, 2013

The road to recovery

It has been a long three weeks of healing for Noah and his femur. His pain has gotten much easier to deal. Of course that right hip is quite a booger. Always giving him some pain
His Dr was not much help and disagreed with my plan to keep him on a blended diet and vitamin d supplements but since I made this decision for the first time He is gaining weight and looks amazing. A mother always knows!

although these roads are not easy all the time I will always take the path I know in my heart is right for him. Dr's are wrong with this disorder and always have been. For 13 years they have been playing the guessing game with his life and now. ..
I take control.

Wednesday, June 19, 2013

Love and special needs

There are no words that mean as much as a smile from a special needs angel

Monday, June 17, 2013


So last night before it got dark I took Noah to his favorite pathway when I realized how cold it was getting and looked at Noah's little pockets on his jacket ,

I thought how silly that was but it still made me sad for a minute. Something so simple like unused pockets. It dawned on me that Noah's pockets have never been used.
  Never really thought about The fact that Noah's never seen or used a pocket. Seemed so silly to think about. Then I approached the corner and saw this sunset. At that moment pockets did not seem so important. And the cold didn't feel so bitter.

Tuesday, June 11, 2013

Free cookbook for blended diet

Found a wonderful site offering great nutritional information for blended diets and overall good health.

 Free Book can be downloaded here

Schizencephaly child of the week

If you would like your Schiz kiddo story of the day/ week shared please let me know. I share on FB, the website, Our blog and groups. Just inbox me your story along with pictures you want us to share,

Our Kiddo of the week is Andrew Baatz. His momma says "
Andrew Douglas Adams, born March 18 2012, he was diagnosed July 26 2012 and was diagnosed with Bilateral Closed Lip Parietal Schizencephaly. He has Strabismus Amblyopia/duanes syndrome, also was recently diagnosed with Central Sleep Apnea and Insomnia. He has reduced sensitivity, hypotonia of his right side, and weakness of his right side. He just learned how to sit up just after his birthday!!!!:)

Sunday, June 9, 2013

Broken femur and blended diet

Noah suffered a femur break last week and we were discouraged to find the Dr had no solution to helping his brittle bone. After asking repeatedly for test and vitamin d supplements we were denied. So we decided on a holistic Dr and a blended food diet for boron and more supplements

Wednesday, June 5, 2013

Noah is resting after a long day

This day was filled with such defeat.  Noah finally fell asleep around 4am after excruciating pain from his right leg

We are praying for no surgery but it's not looking hopeful. We do not have a cause to the collapsed femur

Broken Femur

Noah has always been a strong little boy, so of course seeing him with a pained look today made me call his dr right away to question if this was due to his dislocated hip. His Dr insisted it should wait and I should give him Motrin
 Around 9:30 pm I looked at his knee and noticed it was bulging out. I immediately called 911.
 5 hours later we have found due to his brittle bones his femur has literally caved inward and in most cases like these they would require rodding but due to Noah's small bones and brittle bones we are unsure what is going to happen at this point.
 He is in a lot of pain and is resting at home now with Morphine awaiting his dr appointment in the morning.
 I have shed many tears throughout this year. This year has been filled with many ups and downs. His personality has become a driving force in the house and his communication has begun to amaze me. But these hardships have become such a hard thing to sleep through at night.
 I worry about his life. I know He is as healthy as can be but since last June 2012 we have had 6 surgeries and 11 hospital trips for serious issues.
 He is a hero to me. I cannot believe the amount of love he holds and the strength he has to smile at me when he is hurting. It's as though he is comforting me.
 I think the next few years are going to spent with a lot of hugs and good memories. There has to be some light coming through soon.
At least I still have hope the sun is just about to burst through these bad days, Until then we just breathe.

Sunday, June 2, 2013

Botox session

Watch "VIDEO0715.mp4" on YouTube
This video hopefully will help other families understand What these injections are like and Why we do them. They will help with Noah's right arm and upper scoliosis issues

Noahs new bed

Noah's new bed arrived and at first he was very reluctant. However after playing elevator on it a few times and attaching  his iPad he is Happy as can be. It is just enough room for my bed in my room and his since he has never slept in his own room since his seizures began in 2003  even though he hasn't had another seizure since 2009 I like to keep a close eye. As mother's do

Monday, May 27, 2013

Life with Special needs

 I remember the day I found out I was going to have a child with special needs. I sat there after getting the news staring at the book "what to expect when you are expecting", I remember thinking that I hated that book now.
 Parenting is hard enough but hearing the news you are going to be faced with even more challenges and issues makes it even more stressful. There is no timeline of events. When they will smile, laugh, crawl and talk. Those things become a reminder in the second book what to expect the first 12 months and you learn to hate that book as well.
 The first few months I would go back and read in them and get discouraged knowing my child was not on track. He was not even smiling by 4 months. The dreams and aspirations I had became nothing but stress and worries compiled into a book that never existed for families like mine.
 Suddenly friends and family begin to change. They do not quite understand what you deal with and you get annoyed over stupid comments or the milestones their children are reaching. You begin the whole mourning process. It is completely normal. I think mourning with a special needs diagnosis is absolutely like dealing with a death. That may sound odd but I remember all the phases of it. Hearing the news, the denial. Disbelief.....There had to be a mistake. Certainly someone read a file wrong or did not see something and misdiagnosed. The research. Hours and days spent trying to make the diagnosis not as scary but finding site after site and book after book causing even more panic. I would iscolate myself from everyone so I could concentrate on what was happening. I went through depression and fear to every degree. And there are many stages to that level in itself. 
 Then we move to the anger part of this. Anger is the worst because it is not projected at a single person , it is a personal rage we build up to defend ourselves. I was angry with everyone, Doctors because the more I located the more I found on prevention, My close family because even though I angry and scared and removed myself into iscolation they should have been there to understand. Anger that it happened to me. I was angry for my other child that was looking forward to having another baby to play with. There would never be those typical hallmark moments where life was just normal. I was even angry at God. And that is completely understandable. I felt cheated and punished.

 Bargaining and pleading along with blame was another stage. I offered myself many times to be the one to suffer. I never realized I already was in my own way. I should have done something different. I should have checked what I ate, looked at the entire pregnancy in a whole and tried to analyze where I went wrong. Maybe I should have read more about supplements. Maybe I should have realized something was wrong. What did I do to deserve this? And of course why can't I fix it? The last question is by far the hardest.  
 As a mother and a woman we are expected to nuture heal and be strong. When our children come to us in tears because their toy is broken we become expert at repairs. Glue guns and needles and thread by our side to make sure our children never have to feel like they are broken. Everything is fixable. It is far different with special needs. There is a defeat in that area. No patch or glue stick can bandage a missing brain part or cure a vocal cord. Although we can spend hours with therapists trying to move forward let's face it at the end of the day we feel defeated. 
 I never was able to move completely out of that stage. After this many years ( 13) I still find myself trying to glue pieces together and "fix" what the doctors cannot. I find it exhausting but a necessary part of my life. If I did not go through this occassionally I would not be a human. 
 Most parents forget to chart things after 2 years old. We are special needs parents have our childs life in a binder filled with tests and medical exams, appointments and shattered dreams. Sometimes we may even have some great milestone reached. Those are celebrated even throughout life. The first time our child can express themselves and we understand. Those moments that no one can understand that complete elation associated with it, except another parent to a special needs child.
 There is another stage called "acceptance". I find that one to be the hardest. Of course I accept this happened. I see it and live it. But I simply find it hard sometimes to accept. Unlike a death and mourning There is no closure. Our childrens stories stay open. A reminder of something that happened and we live everyday. Any great breakthrough and accomplishment still has the trace of the fact that there is a delay and very hard road that was taken to get there.
 I find that even though most friends I have with "normal" children instead of asking how my child is, will say "are they doing that yet?" That is especially difficult to be asked. If they are not you feel a sudden sense of disapointment in the fact they are not there quite, If they are you feel sort of let downthat the question was posed in such a demeaning manner. And then the process can start all over again. I choose to surround myself with others that fully understand my life and do not feel a need to ask questions like that. They are too hard to answer and a personal goal. One that I take in great stride and feel good about. It is strange how one simple question can put you back into stage one. But it happens all the time.
 Finally There is always the awakening stage. The one we get to celebrate. Those moments when we do see some move in the developmental stages and we can breathe a little easier. Those can be short lived but ever so worth the other stages in this journey.
 I do not think I take for granted one breath anymore. I check on my child throughout the night just to make sure he is still alive. I realize at any given moment some new obstacle can happen. Something I never thought would change everything becomes our new point of tackling. It is a world of stress and hope. It has many faces and stages.
 I do not have to worry about the simple things like will my child marry the worng person or be faced with depression or bullying. That simply will never happen. For my child, he will never understand those stresses and that I believe may be a blessing. One less worry in life. 
 I feel I am lucky in some ways because I know love to a degree others cannot fathom. I understand disapointment and hurt like not many others can. I can brush off the silly things and the stares now.
 I think the hardest part of life in my world is knowing these stages repeat themselves. We mourn like a death from the first breath of life our child takes after a diagnosis.  A mourning of things we will never be able to celebrate or change. And a underlying fear and worry that outliving our children is a very good possibility. 
 I fill my days with hugs and kisses and time with my child because I live with those fears every night. I have severe panic and can often be found pacing in the house at 4 am because I live with this on my back and it never rests or allows me to fully rest.
 Life is different in this world and it changes constantly. But one fact remains. It is an endless cycle to a mother and family that is touched by it and one that many people will never understand. And we learn to adapt to it's surroundings knowing nothing will ever be the same. 

~Tricia Dennis~

Saturday, May 18, 2013

Schizencephaly awareness banner flying high in NYC

As you know the Famous Liana's Ransom is taking our banner in hopes to share awareness around the world. Today he docked in NYC where our Banner is flying high.
 What a great way to kick off Schizencephaly Awareness day tomorrow May 19th.
 Don't forget to wear Purple and green and tell people why.
 and share the word WWW.noahscart.org!